Disney

What Mary Poppins, Bert, Walt and Merlin Knew About Life’s Ups and Downs

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Disney, Mary Poppins, Grief, ALS

“Mary Poppins”
Disney and Cameron Mackintosh Musical Based on the Film

This is a time of year that I simultaneously eagerly anticipate and dread, and I find that am more reflective about my past, my present and my future. As a teacher, who doesn’t love time off from work!? However, this is also the time of year filled with memories of time spent in the hospital with Ben as he succumbed to ALS. Mary Poppins and Bert said, “Open different doors.  You may find a you there that you never knew before. Anything can happen.”  I see that I am the ever-evolving product of all the good and bad experiences, and although it took me a few years to get to this point, I have been following their advice, opening new doors, doing new things, rediscovering myself and considering new paths.

Last weekend, I visited my good friend, Dorie, whom I have known since high school. We had lost touch for a while, but the magic of Facebook brought us back together. For the past few summers, I have gone to visit her upstate and she and her husband have come to NYC to visit me and enjoy some theater. Last weekend, we went to a place called Animal Adventure Park. I love animals, and here you can pet and feed most of them, which is great fun for me.

I have always loved animals. Ben became enamored with them after enough time with me. We shared a love of penguins, and he became very attached to my cat Tiffany (she was not so attached to him!) and to our cat, Disney. It was on a whim last summer that I followed a dream to visit the Georgia Aquarium and participate in special encounter programs with sea otters, penguins and dolphins. During those sessions, I realized how much I truly love being around animals and I feel a tremendous sense of fulfillment when I interact with them. I admit that it broke my heart that Ben could not be at the Aquarium and meet the penguins with me. Still, the animals were a huge source of comfort, joy and inspiration to me.

When I researched the Animal Adventure Park after Dorie mentioned it, I discovered that they have a sloth encounter, in which you learn about, feed and pet them. Sloths are among the animals I have been so eager to meet, and fortunately, Dorie and her husband were also enthusiastic about it. I then discovered that they have a river otter encounter. I am kind of obsessed with otters- river and sea otters. I could not resist the opportunity to shake paws with an otter and thankfully, Dorie was willing to accompany me!

The encounters did not disappoint! They were both wonderful. The animals each have their own personalities and preferences, which is fascinating and delightful. I was in heaven. I knew that Ben would have enjoyed it and I felt good about acknowledging him. This time, I didn’t feel angry or guilty about enjoying it without him, I was proud and happy to keep him with me in my heart and thoughts. I felt the closest to myself that I have felt in such a long time. I was with people I care about doing things that I absolutely love.

Afterwards, I posted photos on Facebook- after all, a large portion of my news feed is dedicated to otters and sloths, and now I’ve actually met them! Several friends commented that I looked so happy and that my smile was huge. I feel grateful to have friends who are always cheering me on and who want to see me thrive. I had to smile and laugh just seeing how positively gleeful I was. Looking at myself in those pictures, I saw that I have once again truly found my smile. I even fantasized about possibilities of working with animals in the future.

Walt Disney said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” As usual, Walt was right. I am a shy person by nature, yet I am also friendly, reflective and interested in so many things. After I lost Ben, I had to reinvent and reshape a social life. Of course, as I have always said, I am so grateful to have incredible friends and to have friends that go back to my childhood. Still, I had to take a more active role in socializing. When Ben was ill, I got very used to doing things on my own. I am comfortable on my own, which is a good thing in many ways, though it can be lonely and isolating. I have opened doors and done things like taking the opportunity to reconnect with friends like Dorie. Next week, I will head to Chicago to see my college friend Monica and her family, which has become a favorite annual tradition. Although I am a huge klutz and do not generally follow sports, I have become a devoted Cubs fan and love going with Monica to Wrigley Field- another new side of myself! I am also heading back to the Georgia Aquarium. It simply gives me so much joy to be with the animals in that absolutely spectacular place. This time, in addition to the sea otters, I will meet sea lions and even get into the water with beluga whales! Donning a wet suit is something I wouldn’t have imagined doing, but curiosity has taken me there! I have also opened new doors to build new friendships. It hasn’t been easy, but I have indeed met many lovely people and learned new things about myself in the process.

In Disney’s The Sword in the Stone, Merlin explains to young Arthur that, For every to, there is a fro. For every stop there is a go, and that’s what makes the world go round. In life, there are ups and downs. In grief, there has been progress but there have also been setbacks. I have discovered that I am a person who wants and needs to open doors, but I have to do it in my own time. I feel like I have established a more consistent balance of keeping Ben in my heart while delving back into my life. I still do things that I know he would like in order to experience them through his eyes, and for him, but I also allow myself to venture forth on my own terms, being less of an observer and more of an active participant in my life. I know there will be tos and fros and stops and gos, and I am getting better at letting myself feel them all without getting angry at myself or judging myself harshly. I would not have expected that summer would be a time that I would find my smile, but I do believe in pixie dust, so maybe it’s Disney magic that’s clearing my path.

It was a dream come true to hold a little otter’s paw!

 

I found my smile!

 

 

Yesterday- Memories, Grief, And Looking Towards Tomorrow

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On Friday, I saw the film Yesterday. It’s not a Disney film, but I see those, too! It’s a fun film about a glitch in time (the one everyone worried about, which never occurred, at the stroke of the year 2000) in which all memory disappeared of the existence of The Beatles. It’s hard to imagine. I saw the film largely because of Ben’s love of The Beatles. As I frequently do, I wanted to see it through his eyes. When I attend Disney films, I often sharply feel Ben’s absence, and sometimes I do feel his presence, but this time I wanted to be his eyes, enjoying it as he would. It had emotional moments for me, and, even without the obvious title, made me think about “yesterday,” and the concept of time as I’ve journeyed through caregiving, watching Ben battle ALS, coping with the depths of grief and the adjustment to co-existing with it.

If I travel back enough yesterdays, I remember that the first song I ever danced to with Ben was The Beatles’ Twist and Shout. We met at work and at a gala, before we were actually dating, when that song came on, he grabbed my hand and took me to the dance floor. I learned how much of a fan he was of The Beatles and developed more of an appreciation of them. Now, I listen to the albums more often and with more love. During the yesterdays of Ben’s ALS struggle, when we were fortunate to travel to Walt Disney World several times, at Epcot’s England pavilion, I loved watching Ben watch and play the air guitar along with the live bands as they performed music of The Beatles. During the yesterdays of Ben’s time in the hospital, and even on his very last day on this earth, musicians visited him to play Disney music and some of Ben’s favorite Beatles songs, including his favorite, In My Life. On his first day in the hospice unit, Ben had a visit from one of the very kind residents who treated him early on in the hospital, before his tracheostomy and feeding tube. They spoke for quite a while about music and which was their favorite Beatles album. It wasn’t easy for Ben to communicate, but the resident did a great job reading Ben’s lips and I was there to help translate. This resident did not have to visit, but he was a lovely, compassionate soul, and he had to deal with one of Ben’s crises on his very first day as a resident. I know that he will be a wonderful, caring doctor. A lot of yesterdays. A lot of memories. A lot of sadness. But, a lot of love and even laughter in the darker times.

Walt Disney World, 2011.
Ben’ in one of his many Beatles tshirts.

The lyrics of Yesterday start with

Yesterday
All my troubles seemed so far away
Now it looks as though they’re here to stay
Oh, I believe in yesterday

In the film Yesterday, some of the past is erased. It’s a flawed plot, but it did make me think. Imagine if The Beatles had not become The Beatles. Imagine if John Lennon had not been shot. And, more to the point, imagine if Ben had never been diagnosed with ALS. Imagine if there was no ALS? How would life play out? Thoughts like that do at times drift through my mind. It happens often when I see elderly couples walking hand-in-hand, because Ben used to always comment that we would be a couple like that.

2010- Shortly after Ben’s ALS diagnosis and still standing, albeit unsteadily. In his favorite Beatles shirt at a fair with my Pets en Voyage products.

The concept of time is fuzzy when I think back to my days taking care of my dad and Ben. I measure time by significant events in the progressions of their disease and then “firsts” without them and, of course, milestone dates like birthdays and anniversaries. February is a month I dread because it was my dad’s birthday, Ben’s birthday, the month when my dad died and, most recently, the month that my cat Disney died. Summer is the marker of when I lost Ben. The start of each school year reminds me of the insanity I felt when I returned to school a couple of weeks after Ben died, feeling the drastic change of not having the same caregiving responsibilities, which only magnified the feelings of loss and the accompanying grief. They say time heals all wounds. When it comes to grief, I think time helps you adjust to and learn to coexist with the grief. Sometimes my experiences feel like yesterday, sometimes they feel like further in the past.

Indeed, before Ben’s diagnosis, it’s not that life was perfect- it never is- for one thing- my dad had cancer, but an ALS diagnosis sent us into a tailspin. There was always the wish of going back to yesterday.

The narrator says this in reference to Cinderella’s grief over the loss of her mother.
Cinderella © Disney 2015

The narrator (Fairy Godmother) of Disney’s 2015, live action Cinderella said, “Time passed, and pain turned to memory.” This is one of the Disney film quotes that always gives me pause. I can look back at my yesterdays and say that after nearly four years, I still feel the pain of losing Ben. Pain has not turned to memory, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. There has been a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also defining and diving into my new “present.” Pain, sadness, joy, anger- a bevy of feelings and emotions related to my yesterdays- are all part of cherished memories and I see that they continue to shape me and lead me towards a bright tomorrow. I even made sure that I visited Abbey Road when I returned to London in 2016- it was a way to honor Ben, have him present with me, and see London, one of my very favorite places but one I never saw with Ben, through his eyes. Yes, I wish I could erase ALS, but this was our unique story. It did not have a Disney happy ending, but it did have love and even some pixie dust. I will carry in my heart all of those yesterdays as I face today and tomorrow.

Feeling like a Beatle, as Ben would have wanted to do.

For My Mom- A Birthday Tribute

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Today, July 8, would be my mom’s birthday. Although, I have written quite a bit about my mom and how close we are, I like to write an annual birthday tribute to her.

When I think about the time, nearly four years ago, being in the hospital with Ben on her birthday, and wondering what was going to happen to him while missing her, I still feel overwhelmed by the fact that I have lost the people I loved the most in the world. I do feel so fortunate to have known and shown so much love in my life. And, I still feel much love. But, my life has changed dramatically in many ways, and sometimes it can feel terribly lonely.

We were always Mickey Mouse fans!

My mom is the person who introduced me to Mickey Mouse and instilled in me an eternally child-like wonder. When we were in London together, I remembered how excited my mom was to go to Paddington Station and the Paddington store in Paddington. The woman in the shop was so taken by my mom’s exuberance over the little bear and being in the shop- it was hard not to get caught up in my mom’s child-like delight- that she excitedly handed my mom a Paddington Bear doll to hold while I took her picture. So, it wasn’t all Disney, but Mommy’s first true love was Mickey.

London 1987. My mom could not wait to visit the Paddington store!

I look at our old photographs and remember the laughter. I am proud to have inherited her ability to celebrate her inner child, her youthful demeanor and her joyful spirit. Sometimes people are surprised that she passed away more than 25 years ago, because I talk about her so frequently and vividly. She is always dear to my heart and so much a part of who I am, but also, of the person I aspire to be.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

My mom was my example of the consummate caregiver, perhaps being too selfless. She was so generous and kind, always smiling as she balanced the needs of everyone around her. She tended to my grandmother, who lived with us, and also took care of my great-aunt in the nearby nursing home, and my great-uncle who insisted on living alone but needed much assistance.

I also inherited her klutziness, but, with that, I also have her ability to laugh at herself.

On her birthday, I will continue my tradition of watching The Little Mermaid, because it was one of the last films we watched together. I love to remember how much we laughed when we watched it together, particularly when we looked at my grandma, who just did not understand our amusement. I wish that I had gotten a chance to visit Walt Disney World with my mom, but she has always been present when I have been there. It always touched my heart that Ben was so aware and acknowledging of her when we were there.

I proudly say like mother, like daughter!

Happy Birthday, Mommy! I love and miss you every single day.

 

On July 4- Thoughts of Independence, ALS and Aging

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Today, here in America, we celebrate Independence Day. In our challenging political climate, I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

I also can’t help but think of independence as it relates to ALS and to aging.

My dad was used to being the tough guy- after all, he was a Marine. As he got older, it was hard for him not to be able to manage the tasks that required physical strength. It was a hard thing to admit that aging has taken some of his independence. Even things that he could do independently, he wanted me to take care of. He wanted his independence but he wanted to depend on me. He wanted to know that I was there for him. I navigated his pride as I, the consummate klutz, and a pretty weak one at that- lifted and schlepped for him. He worried about my back but he did not want to have groceries delivered. I shopped in the city, cooked for him and brought everything to him by train. I know that he was comforted in the knowledge that I was going to take care of him. He was coping with fear of being alone, fear of his cancer progressing, fear of dying, and even fear of leaving me. Whatever it was, my dad had cancer, he was more than eighty years old, and I loved him. I was his caregiver and I was his daughter. Actually, anyone I met during his doctor appointments or visits to the neighborhood told me that I was his life. I knew that and he wanted me to know that.

Daddy loved to visit the Cradle of Aviation museum and relive his USMC days.

Ben dealt with a loss of independence as ALS stripped more and more of his abilities. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

Imagine the loss of all of those abilities that we take for granted. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly four years later, am I becoming more comfortable with my independence. Still, I blog and maintain my deep connection to people who are experiencing ALS, as patients or caregivers. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

Walt Disney, Walt Disney World

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.” This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. Let’s be grateful for independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my practical way, I contribute, through donations, volunteering and the raising of awareness about ALS. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

Happy and Hopeful Independence Day.

Disney Pixar “Up” Helps When Grief Has Me Down

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Up Copyright © Walt Disney Pictures, Pixar Animation Studios 2009

Today was the last day of school. I eagerly anticipate this day throughout the entire school year. Today, however, I felt terribly sad and lonely. This is the fourth summer that I have approached since Ben died. I guess that I may never enter summer without remembering that summers were difficult for me when my dad and Ben were ill because I juggled caring for both of them. Just as I didn’t get excited about weekends, summer didn’t really represent any kind of freedom or fun, other than being away from the school building. Ben died in August 2015, having spent the summer in the hospital.  I still feel twinges of guilt and sadness that I was so angry that, without talking to me first, Ben made the decision to let go his home health aide because he said that I could do everything since I wasn’t teaching. It ended up being  only a week before he ended up in respiratory crisis and in the hospital. I don’t like remembering the anger and resentment, though it was an honest part of our experience with ALS. I also remember the days and nights spent at his side in the hospital, when there were terrifying, devastating, frustrating and also many loving moments.

I relate so much to this scene from Up. I like to reminisce about my time with Ben. But, there are times like today, when I want to share the celebration of the end of a school year with him. Like Ellie’s, Ben’s chair is empty. He’s not at home. I’ve gotten better at planning my own adventures, but on days like this I am too keenly aware of being alone.

Every summer has come with melancholy and anxiety, and a regression in grief, but this seems to be the first time I have had a very tearful last day of school. I don’t really know why. I guess I will always be thrown by the unexpected tears and clinging sadness and loneliness. I don’t fight the feelings. I acknowledge them and let myself have the moments. I know that the profound loneliness and loss that I am feeling will fade and I will get back up to speed. I’ll use this time to spiritually commune with Ben, try to work through that difficult summer, and try to balance his  absence and presence. Maybe part of my sadness is the change of routine. With school, Ben was part of my structure- I listened to my “Ben playlist” on the way to school every day. I have not firmly organized my next few days. That was probably a mistake. Without structure, I might be able to distract myself, but I might flounder. I’ll have to see how it goes. I’ll try to remind myself that I am going to have new adventures this summer and he will still be with me, just in a different way. That will never be enough, but it is a lot.

Ben and I at Walt Disney World, July 2014. A good summer memory.

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